Toddler is sick again, different behaviors this time, should we ask for further testing?

Question

My 20 month old gets sick approximately every 2 weeks, so I am no stranger to viruses, flu's and infections. However, my daughter's most recent sickness is less easy to identify and her behavior is different than when she usually gets sick. My question is, should we be more aggressive and request more testing or blood work? I am tired of feeling like I am over-reacting because "toddlers get sick".

The details from her most recent illness are: We traveled to California over the weekend. By Sunday she started to get really irritable and stopped eating. On Monday and Tuesday she had a fever (104 at night, 101.8 during the day when Tylenol wore off). She had no other symptoms. Took her to the doctor and ears, lungs, nose looked fine, throat, slighty red. They dipped a tiny urine sample and found trace amounts of blood and altered white blood count. We started giving her Augmentin for a possible UTI. Very irritable Wednesday and Thursday. She woke up Thursday morning with a rash. Took her to the doctor and found out the urine culture showed no UTI. We stopped the antibiotic and gave Benadryl. She was inconsolable most of the day (usually does not react to negatively to Benadryl). and hasn't eaten a full meal in over 2 days, and she is a bit unstable when she walks.

The behaviors that are different this time are: she is acting aggressive, she is biting, pulling, hitting things. She acts like she doesn't know what she wants to make her feel better, she is grabbing at her head, She continually grabs at the front of her diaper and makes a grimace face, yet she doesn't have a UTI. She woke up in the middle of the night screaming but acted confused and didn't know what she wanted in the middle of the night but didn't have a fever. She is making strange faces/expressions that I have never seen, things she normally likes she is pushing away with disgust or refuses to do, she is falling asleep on me or the couch. She plays for a few minutes and then comes to me crying.

Here is some health background that may be helpful: She has low weight gain and is not on a growth curve (she is 20 pounds right now). We started to investigate her low weight and found she does not have any GI issues per the 3 biopsies done during an upper endoscopy. She does not have any allergies. They found she had low IgA antibodies when they did blood work for ciliac. Her weight started dropping at 7 months old, and her frequent illnesses really started to get bad at 15 months old. This is her second fever this month.

Answer 1

First off always trust your instincts when it comes to your kid - and you are her only advocate.  My son gets something about every 4 weeks and a couple of months ago he went through all the tests including a UTI (they put in a catheter to get his urine and it took several days for him to be okay with peeing - it clearly hurt, so that may be one of your issues) and it was negative.  They also did a blood culture and something grew out of that.  Basically he had a sinus infection (no outward signs) a high white cell count and they couldn't figure it out - so maybe ask for a blood culture.

My son IgA has also been tested, and was normal but I'm suprised there wasn't anything further they could do for you besides test for celiac disease - maybe try a second opinion?

Also while your daughter may not have a allergy to something she may have a sensitivity.  It might be worthwhile to change her diet, avoid gluten and processed foods with chemicals (I've heard nasty things about some of the dyes) it certianly won't hurt your daughter and if it works its worth the effort.  It may be worth the effort to find an peditrician that utilizes non traditional/alternative medicine - sometimes they are better at looking at the whole child and the overall pattern to see what is going on.

Hang in, its frustrating and its annoying to be treated like a hypochondriac mom - but that's what it takes.

Answer 2

The whole crying, falling asleep, mood change thing sounds like she is not eating enough food. You say there is a weight  issue. And no full meal for 2 days. Unstable when she walks. The brain needs calories, as well as the body. She will be irritable and confused without food.

Fevers of unknown origin indicate something slightly intangible about body chemistry. My guess would be diet. Take a printout of your Question to an experienced doctor.

Answer 3

Wow, you are having a rough time of it!  Yes, definitely test until you can find something conclusive.  You might try getting some imaging done of her abdominal area, since that seems to be getting some of her attention, to see if there are any blockages, or something.  You should probably go to another doctor just to see if he has any new ideas.  Definitely keep a journal of symptoms and medications, including fevers and tylenol.

Kidney infection or stone comes to my (unqualified) mind.

The bad thing about babies and toddlers is that once they don't get enough sleep for a night or two, they don't sleep well even when they are sleeping, and this pattern just worsens until sometimes they do seem ill, or even get ill but I must say this seems like a lot more than just that.

Sorry I don't have an instant diagnosis for you - I know that is what you were hoping for (I would be too!)  Good luck.